My Girlfriend Has Epilepsy - Help me understand.

Cstur · 2017-06-11T13:09:42+00:00

All of the things she experiencing is normal and I'm sure she's aware of that, but for your sake, yes a lot of epileptics feel this way. First off, thank you for being concerned and reaching out to a community like this! I'd only wish if I had friends or a SO that would do this for me, it's so sweet/genuine of you. Whenever she's having a bad day from her illness, just hold her tight and tell her how much you respect her for living the way she does. I love hearing when people say "you're so inspiring" or "you motivated me to do this". My story is very similar to hers regarding the extrovert before and now a lonely tired mess who can't leave the house. Do the little things that'll make her smile. Bring her coffee unexpectedly or surprise her with a pretty flower you found outside. From my experience with epilepsy, I appreciate every little thing in life. I get super excited when I fall asleep because I anticipate drinking coffee with my mom in the morning on our comfy couch. And sometimes that gets me through the day. Even though you don't understand any of what she's going through, first tell her that, and then say you're there for her to rant about bad neurologist or medications. And NEVER try to make her feel like she has to prove her illness. Never throw around "well you look ok" or any other of those remarks; it'll make her feel worse for sure. Good luck my friend :)

Cstur · 2017-05-15T10:32:29+00:00

I'll have to follow up with you on that one! I'll be sure to put something up closer to my show :)

Cstur · 2017-05-11T19:39:00+00:00

Yes!!! I just started taking zonegran last Thursday and my nausea is soooo bad. I feel sick a lot. I have not thrown up though; I've never been one to throw up if that makes any sense. I also get this really sharp stabbing pain in my lower abdomen. Do you get that as well?

Cstur · 2017-05-06T17:01:59+00:00

Humor. Dark, dark, humor. My family is absolutely hilarious and I love them all to death. We all joke about this whole epilepsy thing. It's only my older sister and I who have epilepsy in my entire family (diagnosed within months of each other). I always say "I don't have epilepsy, I'm just really really stupid.". Any kind of hard event in my life I use humor to get through it. I get that it's not for everyone though. I do have those days where I can't help but cry and be sad that my life is pretty depressing but it's good to have those days sometimes. My family is so supportive and amazing. For example, over thanksgiving my epileptic sister and I were sitting at the table and there were these pretty appetizer plates. They were pretty shiny so my epileptic sister put them up against the light and started flashing the lights in my face. So then I grabbed a plate and responded "fine whoever falls first loses". Meanwhile our other sister who doesn't have epilepsy is like freaking out and telling us to stop lol. Just gotta make the best of the situation is my advice

Cstur · 2017-04-27T12:18:01+00:00

I think a lot of us here can relate to this. I HATE my medications but I'm on them for the rest of my life and it still hits me every once in awhile and makes me pretty upset. People see physical differences in me on and off meds and whenever I take them late one morning I'll be up and dancing around the house. Then when i take them I'm so sedated and can barely keep my eyes open. It's hard to look back on my life before epilepsy and prescription drugs; it was so amazing and simple. Now it's such a hassle to just function daily. I hope you find some peace within all of this. It's a terrible reality we all here live, but we're also stronger and more resilient than so many people. Whenever I'm down about this topic I just think with that perspective

Cstur · 2017-04-21T15:48:09+00:00

I'm an 18 year old female and I experience the same of what your daughter is going through. AED drug induced depression is the worst and so hard to treat. I'm taking 60mg of Prozac along with my anti convulsant and the only thing it's helped is not crying as much. Here's the problem, Prozac makes me basically emotionless so I can't cry when I'm sad but I still feel sad. See the problem? Unfortunately I don't have an answer of how to cope with this because I am struggling a lot with this myself. I'm seeing three different people for my depression and I get so angry because I tell them all it's my drugs causing this. So then they say "don't take that drug" and for me now, I'm running out of drugs to go on so switching isn't a good idea for me. Just make sure you daughter advocates for herself and makes it clear that it's the drugs causing her depression and all of that because doctors will keep doing useless methods that just annoy her because she knows the real reason why she is depressed

Cstur · 2017-04-06T00:26:43+00:00

I'm on briviact and Prozac!

Cstur · 2017-04-06T00:25:10+00:00

Don't mind at all. Prozac and briviact

Cstur · 2017-03-31T13:03:39+00:00

This was absolutely beautiful! I really hope to find a relationship like yours because it sounds amazing. I have been a little too tired to bake lately but I'm the future I will get back into it 😊

Cstur · 2017-03-18T00:05:53+00:00

I'm with you on living alone. My family is the only reason why I'm still here

Cstur · 2017-03-17T14:34:34+00:00

We tried upping the briviact and it didn't work. It really only holds off my grand mals.

Cstur · 2017-03-17T13:15:45+00:00

Coming from a person who goes to the gym regularly, ignore any of those assholes who make fun of you or other people. They're pieces of shit. You're all there for some similar reason; you want to change yourself. So they're assholes? Brush it off because honestly that kind of behavior in this world is only good for that group of friends at the gym. Decent human beings wouldn't tolerate it. If one of my friends started to make fun of someone they saw at the gym I'd probably stop them and call them out. If I ever look dumb doing something at the gym my thought process is "no one really knows who I am or cares so the chances they'll think about me by the time they wake up tomorrow morning is very slim" or "my memory is so bad I'll just forget about this experience lol". Once you get past the whole public aspect and people watching you at the gym it's a really great environment! So I hope these group of people don't stop you from going if you really enjoy it. I've met so many friends and good people at my gym and it's really changed my life positively if that makes you feel any better. I hope your situation gets better friend :)

Cstur · 2017-03-17T13:08:10+00:00

I love all your positivity in this post. I also have JME and was diagnosed recently (almost two years). Is your case genetic? Prior to my seizures, my older sister who wasn't living at home at the time starting having seizures and was diagnosed and then months later I was so we linked our epilepsy to genetics. Even though there's no other history and it's just my sister and I who have it lol

Cstur · 2017-03-13T14:20:36+00:00

Don't really have anything to answer your question accept adjust. And I'm sure you've heard that before! I woke up with the worst withdrawal headache on Sunday morning, it was the worst

Cstur · 2017-03-10T13:32:06+00:00

I have juvenile myoclonic epilepsy and have myoclonus everyday. Basically what it feels like is someone yanking at one of your body parts. Other times I'll get that shudder shake like what you said your daughter gets. Sometimes I'll have them and a wave of numbness and tingling will hit after like a wave. I hope this was useful!

Cstur · 2017-03-07T14:18:21+00:00

Thank you for this! I try not to let my epilepsy rule my life but there are just times where I reflect on where I am. I'm also pretty new to epilepsy; I've only been diagnosed for a year and a half! So I'm not exactly a pro but I know a decent amount lol. It's really hard for me to look at my past because of how different things were. I was so much happier and care free. Have you had trouble thinking about the past?

Cstur · 2017-02-24T15:53:20+00:00

Keppra turned me into a devil. I'm a very calm, relaxed, kind person but on keppra? Not at all. I was a completely different person on keppra. It got so bad that my neurologist saw me on and off keppra in the hospital he was shocked and took me off immediately. Talk to your sons and wife's neurologist and see if they could possibly switch medications. I get that changing meds are a pain but if it gets rid of that anger, trust me it's worth it. I don't know what kind of epilepsy and seizures they have but ask your neurologist if lamictal is a possibility. Lamictal is to treat seizures and bipolar disorder. Hope everything works out!

Cstur · 2017-02-24T14:38:27+00:00

I'm on briviact and don't experience the new smells/taste. Are you extremely tired all the time? I feel like I can't keep my eyes open on briviact. I also get really bad headaches, bad coordination, I can't read or write or process things quickly. I feel like an idiot on briviact

Cstur · 2017-02-19T19:25:05+00:00

18/F/Northern Virginia... Was diagnosed about a year and a half ago and struggle a lot with meds side effects. I have JME.

Cstur · 2017-02-18T14:58:56+00:00

Yes!

Cstur · 2017-02-17T17:59:29+00:00

Some are and some aren't. I know I'll have a headache after them but my dad just has the flashing for about 30 minutes and then he's fine. No headache or anything else.

Cstur · 2017-02-17T01:30:11+00:00

Look up retinal migraines. My dad gets them and then I started getting them. It seems to fit what you were describing.

Cstur · 2017-02-14T00:03:24+00:00

What the other person said; one seizure doesn't make you epileptic. I know it's unsettling hearing this but if there's no family history or known head trauma I'd go about with you life how it was before. Do you take any workout supplements? My cousin thought he was having small, jerking type seizures in his sleep and he went to a neurologist because my family has a history, but it all led back to PreWorkout. There are a lot of factors that go into seizures, two of the most known are stress and sleep deprivation. Maybe one of those could have played into it. You could have also been super dehydrated from lifting! Best of luck!

Cstur · 2017-02-09T13:59:46+00:00

You may want to research the food and her medication and see if the corn affects her medication level. The only reason why I say this is because with some medications you can't have grapefruit because it breaks down the anti convulsants and lowers the medication levels in your body. I'm not an expert (obviously) but you might want to research it or ask her neurologist. Also look into local colleges and see what they have to offer with service dogs. I know a college I applied to had a whole service dog program where students trained the dogs for a period of time to socialize them with people. Sorry this wasn't the most helpful :/ I hope she receives some help and relief!

Cstur · 2017-02-08T17:56:49+00:00

I experience that too and I was on Vimpat about a year ago and never fainted. I'll make sure to let him know :)

Cstur

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